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Tuesday, December 31, 2013

And I'm Still Standing

Three years ago, tonight, Bob came home from the Acute Rehab Hospital. I remember it well. Such a relief to leave and the transport home cost $50.00. Jeepers.

This marks three years of full-time caregiving for me. Three years of cleaning up bowel movements, cleaning up urinary incontinence, managing his meds, daily feeding tube duties, dressing/bathing him, daily (sometimes 2-4 times daily) laundry, doing his therapy, scheduling appointments, fighting the system, trying to keep positive (not always doing that so well), trying not to cry (not always successful in that),  taking care of everything by myself, sleeping alone in our bed, fretting about all these medical bills that we can't pay, praying the washer/dryer don't break, etc., etc...

Three years of ups and downs. Of trials and tribulations. Of hopes and hopes dashed and hopes again and dashed again and new hopes and always trying to keep hope...

I know I am older, wiser, and, I think, a stronger person after all of this. Believe me, this is the hardest thing I ever have done...

Back then, I gave myself a year. I figured, if he wasn't better in a year--- you know, walking, talking, eating -- I'd take those doctors' advice and find a nursing home for him.

But he wasn't and I didn't.

I couldn't, because I love him so much and know that he is happy to be home and this is where he wants to be and I am happy he is here with me....

It's been really hard.

But I am still standing!

Pretty amazing, if I don't say so myself. Didn't think I could do it. Never, in a million years, did I think I could do this. If you would have asked me, say four years ago, could I do this? I would have laughed....I wouldn't have thought myself capable. So! I am truly amazed at myself. But, you know, a girl's gotta do what she's gotta do....

Happy New Year!

Friday, December 27, 2013

Tuesday, December 24, 2013

Holiday Greetings

Merry Christmas & Happy New Year from all of us at The Pink House on The Corner!

Bob, Diane, Boomer, Zenith & Ripley

Sunday, December 22, 2013

The End of an Era

Those of you who know me well, might want to read this post sitting down. Then take care not to fall off your chair.

For others, let me fill you in on some background material.

I, personally, have not owned a television set for nearly 30 years. TV-less by choice, I called it. And I was hard core, a proud member of the 1% of Americans who ban television from their homes--often lending my dog-eared copy of Jerry Mander's book, Four Arguments for the Elimination of Television out to would-be converts. That book delves deeply into the psycho-social effects of television on individuals and society as a whole. The author describes the conscious state a person enters into while watching television as a state of "wakeful dreaming" that is close to hypnotism.  My own personal belief was that TV was not only a big time waster, but a brain numbing addiction, a social isolator and a way to miss out on "real life".

When Bob moved in with me in 1994, he owned a television set. I told him, in no uncertain terms, would I allow it in my apartment. We argued. I think that was our first argument. Then, we compromised. He could be bring the TV if he put it in the closet.

Which he did. Then after a few months of learning to live without television, he sold it.

People used to ask us all the time, what on earth did we do if we didn't watch TV? When we told them we talked to each other, that our nightly ritual was to sit out on our front porch and just talk, people asked, "What on earth do you talk about after 15 years of marriage?"

Well, we talked about everything. How our day how gone. The weather. The neighborhood gossip. The news in the newspaper. My writing. His art. Books we were reading. We talked about absolutely everything.

Then about 4 years ago, Bob came home from a neighborhood garage sale carrying an old TV set and a DVD player. I nearly dropped my jaw. What are you doing with that thing?!  I asked him.  He told me he had bought it for $5.00 and wanted to put it in the back bedroom which he used for his office. Don't worry, he told me, it wouldn't be connected to cable or an antennae, and we'd only use it on special occasions to watch a movie on a rental DVD.

Then, three years ago: the stroke and aphasia. And the end of our nightly conversations...

Before Bob came home from the hospital, I had my dad and my uncle help me re-arrange the living room. Out went the Victorian parlor set, to make room for Bob's hospital bed. In came that TV set and DVD player and the 1940's sofa from Bob's office...

Since then we've watched a lot DVD's. I would run every week to the library where one can check out DVD's for seven days for free. After three years of this, I do believe, we've seen every movie on the shelf -- some of them twice. And that old television set was on it's last legs...

The sad thing was, that, when a DVD wasn't playing or I wasn't available to occupy him with some task or therapy, Bob was pretty much lying in his hospital bed staring at the ceiling and fixating on his pain...

So for Christmas, I broke down. And, with the help of Santa Claus, bought a 32 inch HD flat screen Panasonic television set. Then hooked the whole thing up DISH satellite's cheapest plan. And I still can't believe I've done that. And I'm still trying to figure out how the thing works. And I hope I can pay the monthly bill!

I am still no fan of television, which I find extremely distracting and addictive, and I know this is going to take some getting used to, on my part. Even right now, while I write this, Bob is watching a movie and the sound of it keeps interrupting my train of thought. I tell you, it's hard to blog with the television blaring in the background!

It's also hard to admit that our lives have changed so much since this stroke. And to admit a bit of acceptance of the fact that our lives will never return to the way it used to be.

So we've joined the 99% of Americans who have network television in their homes. Make that 99.1%!

Friday, December 20, 2013

Light at the End of the Tunnel

Finally! We have a court ordered trial date set for the week of May 5, 2014.

Sunday, December 15, 2013

Going Re-Certifiably Crazy!

Well, this past week or so has been a doozy as far as my frustration level goes.

First, there was all the government forms to fill out to "re-certify" Bob for his benefits. We have to do this re-certification every six months for some darn reason and every six months they want not only cumbersome online forms filled out (including listing all household expenses etc.) but also photocopies of his medical expenses sent to them. This time, while filling out the online form, when I was at the very last page, and had spent nearly two hours filling out these darn forms, the system kicked me out and I had to START ALL OVER --- gggggrrrrowl! Then, while photocopying the medical expense receipts/invoices, my @#! printer kept telling me "FATAL PRINTER ERROR!" and shutting down. Double gggrrrowl! But I finally got it all together then had to rush out to the post office, park two blocks away as the parking lot was filled, wait in a long, long line of folks sending off Christmas packages.... ggrrrr....

But that's done.

Add to this, physical therapy is all screwed up.

You'd think, after a doctor orders PT and the insurance approves it, well, we should be all set for the approved 20 sessions before the end of the year.

At least, that's what I thought.  Until the PT doesn't call to set up appointments. And I have to call her, and wait for her to call back only to be told that Bob needs a "re-certification" (there's that word again!) from the PT evaluator, so the PT evaluator is supposed to be calling me to set up a time. So, I wait again, no one calls.

So, I call the agency and get some answering machine and leave a message. When I get a return call, finally, I am told THEY DON'T HAVE A SCRIPT for PT.  And I'm thinking, how can they NOT have a script when the insurance has already sent ME a letter approving it?? I mean, someone had to send the script to the insurance company and THAT would've been the agency, right?

Good grief.

On top of that, the home health agency decides to send a different nurse here last week because we also need a Home Health Re-Certification, which is different than a PT Re-Certification.  I talk to this nurse on the phone and ask him why he's coming. Because it makes no sense to me as we always have the same nurse for re-certifications, the one who comes every eight weeks to replace Bob's feeding tube. But the nurse insists he has to come to do the re-certification and I ask him, since he's coming, would he please check on the PT situation as it seems they've lost the script and he says he will.

So when the nurse comes on Tuesday, he tells me that he checked on the PT order and found the insurance had ONLY APPROVED ONE SESSION FOR NOVEMBER. And I'm like, WHAT???!!!

So, I show him the copy of the letter the insurance company sent to me approving 20 more sessions through the end of the year. And he agrees with me, they must have a script for that, or I wouldn't have gotten the letter. So he takes a copy of the Approval Letter from the insurance company back to the home health agency.

Then on Wednesday, our regular home health nurse calls and says she needs to come over and do a RE-CERTIFICATION.  And I'm thinking, You've Got to be Kidding!? And tell her so. She tells me that she was not aware of anyone else coming over to do a re-certification and she'll check into it.  I also tell her about the PT problem we are having. And she says she'll look into that, too.

And she calls me back.

And tells me, that the home health agency screwed up and sent the other nurse to do a "weekly evaluation" because someone thought Bob was having "weekly home health care" instead of every eight weeks. Anyway, this nurse still needs to come on Friday to do the actual Re-Certification.

Which she did. And she promises to correct the PT problem, too. She promises someone will call to set up the PT Re-Certification. Let's hope they do call before the end of the year, so we can use these 20 visits -- because after that we'll have to get another script from the doctor, another insurance approval and another re-certification...

And I tell you, some days I feel like there is a conspiracy out there, set up just to drive me crazy....

Wednesday, December 4, 2013

One October Morning

It was early October, right around the time of my deposition, and I had just finished up with Bob's morning routine: disengaging the night pump, mixing his morning meds, flushing his tube, when I heard the distinct sound of a helicopter hovering near our house.

Now this is not highly unusual. We live in downtown, in a large city, and often choppers can be seen and heard hovering near the interstate if there is a traffic accident, or around the stadium on the day of a big game, or dashing to and fro from the hospital's rooftop landing pad.

So I didn't think much of the situation and I leashed up Boomer and headed out the front door for our morning walk.

The sun was just beginning to rise and the clouds in the eastern sky glowed orange and purple and red. I looked up, toward the interstate, expecting to see the helicopter there, but it wasn't. When I turned, I was rather surprised to see a bright reddish orange helicopter hovering directly above our garage in our backyard. Which was curious, to say the least.

But I still didn't think much about it. And Boomer and I headed east, down our block, on our usual route toward the alley. We were walking at an old dog's pace, Boomer stopping to sniff and pee along the way, when the helicopter flew from the back of our house to the street and turned east and followed us.

Hmmm, I thought, this is weird. Not to mention, a bit annoying with all the noise. But Boomer and I continued moseying down the block, to the alley, where we turned north and began our trek down the alley.

And the helicopter turned north. And followed us into the alley.

Now this was really peculiar. Not to mention, sort of spooky. As the thing was right above us and flying low, just above the treetops, and flying slow, keeping our pace.  When I looked up, all I could see was its underbelly and those "skids", you know, the long landing feet. I was starting to get a little paranoid.

By then, we were halfway down the alley. And the thing was still above us. So, I decided to turn around and head back toward the street, if for no other reason than to get away from the thing.

And the helicopter started moving backward, staying right on top of us. The thing actually flew backward all the way to the street and always staying right above us.

By then, my heart had quickened. I mean, I was really getting scared. I kept looking up, expecting to see, I don't know, a gun come out of the window aimed at me. But I couldn't see anyone or anything except the underbelly of the helicopter. Directly above us. When we reached the street, my first instinct was to dash directly home, to the safety of the house.

But then I thought, no. I did not want this thing to follow me home.

So I went the other direction, again traveling east. This time I picked up our pace, pretty much dragging Boomer along with me.

And again, the helicopter followed us. Keeping our pace. Down the street, to the next block, where I ducked into the next alley.

And still the helicopter followed and turned down the alley with us.

I crouched behind some bushes under a big oak tree, pulling Boomer in next to me.

And the helicopter hovered above us, just above that tree.

I could see the underbelly of the thing. And the skids. Through the tree branches.

Five minutes passed. I did not move. The helicopter did not move.

I was beginning to think I was losing my mind and imagining the whole thing.

Then a fellow on a bicycle rode past us. He said, "Hey, there's a helicopter above you!"

And I thought, duh. And rather hoped the helicopter would take off after him instead of me. But it didn't.

Ten minutes passed.

Then finally, I heard the helicopter take off. I watched it fly, first straight up in the air, then turn and travel, quickly, over the rooftops, toward the west. A bright reddish orange dragonfly. Without a single identifying marking on it.

Boomer and I came out of the bushes and, although we were a bit shook up, we finished our walk.

That, my friends, is a true story.

And if anyone has a clue why an unmarked reddish orange helicopter would follow a middle-aged woman walking her dog in the early morning -- please let me know!

Sunday, December 1, 2013

100 Things to Blog About and Not Enough Time!

These past few months have been very busy for me, especially with the lawsuit. First, there was my deposition and all the preparation for that, then reading the transcript from my deposition (around 400 pages) and making "corrections", then I sat in on a doctor's deposition, then mediation, and all the preparation for that, and now reading through the depositions of the nurses, etc. It's all been quite time consuming.

Add to that, there is still a constant stream of "authorizations" to sign. These are coming from the defense and are to authorize release of information (medical and other). These "authos" are e-mailed to me by our attorney's office and then I have to print them out, sign them or have Bob sign them, scan them back into the computer and e-mail the signed copies back. This process can take all afternoon, if there are a lot of them, and it doesn't help that my computer is slow and my ancient printer keeps jamming.

As part of the preparation for mediation, our attorney hired a "settlement consultant" company (who knew there was such a thing?). So I've also been meeting/e-mailing/talking on the phone with the settlement guys. Part of their job is to figure out a monthly budget for Bob's care. And then to figure out what dollar amount we would need in a settlement to cover this monthly budget for his lifetime after all the attorney's fees, insurance liens, etc. are deducted.

I tell you, I am learning a lot about the legal process.

Count me as naive before, but I thought if a person won or settled a malpractice lawsuit, they were just handed a check!

Turns out, this is not the way it works. Instead, there is something called a "structured settlement" which involves the defense purchasing an annuity through an insurance company, which in turn provides the plaintiff (in our case, Bob) with a monthly allowance for the rest of his life.  This allowance is monitored/handled by a trust fund and can only be used for his care and comfort.

Although we did not settle in mediation, there is still a chance to settle out of court. Fortunately, any talks of this sort can be handled on the phone or in writing, so we won't have to meet face to face with the defense attorney again--which is good, because, I tell you, I had a hard time controlling my temper/emotions in the face of all her lies and allegations.  And although settling out of court may or may not happen, one must be prepared for this option.

So, in order to prepare --and believe me, I need to be prepared for this because the last thing I want is to be handed a $ amount and think, wow, that will work, only to find out, after everything's deducted, that Bob is getting shafted in the end-- I've been running through the numbers with the settlement guys and also on my own. And it's mind-boggling, to say the least. But I need to protect Bob and am willing to fight for him, if necessary. I think our attorney is surprised at how involved I want to be in all of this. And how stubborn I can be on certain issues!

One thing that I have learned is that I will get zip, zero, nil in this lawsuit -- so much for my pain and suffering. The problem is that any money I'd receive would count as an "asset" (any money held in a special needs trust is exempt) and Bob could lose his government benefits if our household "assets" are too high...  jeepers...

Anyway, add to all of this my daily caregiving duties and that's what's been keeping me away from this blog and, tell the truth, I've had so many things I've wanted to blog about -- including fighting dumpster fires and being chased through the alleys by a helicopter! Maybe one day, I'll get to those exciting stories. Right now, I must leave you, to clean out the fireplace and haul in some wood so that we will have heat tonight, and then the therapist is due this afternoon and I still have to wash Bob's hair...

Never a dull moment, here at The Pink House!

Wednesday, November 20, 2013

When A Question Costs $35.00

So yesterday, I'm going through the pile of medical invoices on my desk and I run across a new one from the foot surgeon.

Now, I've just made a payment to the foot surgeon earlier this month, and I was kind of surprised at the amount still owed. After going over the invoice, I realized that they had charged Bob $35.00 for an office visit which was a post-surgical (free) office visit. So I called and left a message with the billing department.

Who called me back.

And told me that during that post-surgical office visit, I had asked the doctor a question about Bob's right foot. And since it was the left foot that had been operated on, the question about the right foot disqualified the office visit's "post surgical" status. And therefore, we are being charged a regular office visit.

And I said, what?!

She said, you talked with the doctor about his right foot and so therefore you are being billed for the office visit.

I said, but this was a post-surgical visit. They took x-rays of his left foot that day and everything!

She said, well, I'm sorry, you shouldn't have asked about the right foot.

I said, this is the most ridiculous thing I've ever heard of! Since when do doctor's charge $35.00 to answer a question???

She said,  if the question had been about the left foot, you would not be charged. But you asked a question about his right foot.

I said, I asked the doctor if he could look at the right foot because I was worried it might need the same surgery as the left foot. So, I was actually talking about the same surgery as the left foot---

She said, I'm sorry ma'am. You asked about the right foot. And that disqualifies the visit as post-surgical.

I said, Geezus, you ought to warn people not to ask the doctor any questions! You ought to have a sign in the office! This is the stupidest thing I've ever heard of!  Can I talk to a supervisor?

She said, You'll have to talk to the doctor.

I said, Get me the doctor.

And she said, he doesn't take phone calls so you'll have to write him a letter.

And I said, well, we see that doctor tomorrow, can I ask him about this then?

She said, of course.

So we're off to the doctor's office today. But, I just realized, this is a free post-surgical appointment so am I allowed to ask the doctor about the bill? Or will he charge me another $35.00?

All I can say is: GA!

Tuesday, November 19, 2013

A Day at the Beach (sort of)

I did manage to get Bob to the beach while my sister was staying there, and managed to wheel him out to the end of the boardwalk to see the sand and the water in the distance. And I could see the wistful look in his eye. And he said, "Nice."
Bob with my sister and her friend at the beach motel.

But after an hour, his pain levels skyrocketed.

So we didn't stay very long.

At one point, I went down to the water alone, to look out at the waves, and Bob told my sister, "Sad."

Afterward, he told me, "I try."

I tell you, it breaks my heart that he can't enjoy simple things like a sunny day at the beach, anymore.

Anyway, last Friday, we went back to the neurologist and Bob got a second set of Botox injections in his neck, leg and also in his right foot.

Yes, you read that right:  right foot. That because the post-stroke dystonia is spreading and now the  toes on his right foot are starting to curl in just like they did in his left foot. It seems, in fact, that his whole body is sort of twisting and he is no longer comfortable sitting in the wheelchair.  And although his left toes have been surgically straightened, he is still complaining of pain in that area.

The neurologist thinks the pain Bob has been experiencing in his foot and also his mouth are caused by "central nerve pain" and he prescribed Lyrica. Which Bob's used once before and it didn't seem to do anything. But this is different pain, so we'll try it again and see what happens.

Meanwhile, my sister has gone back north and life is back to "normal" here. And I am feeling recharged and much more relaxed, though a bit sad to see her go...

But good news: I got 20 more units of home PT approved by the insurance! So Bob will have therapy through the end of the year. Then, I'll have to fight for more.

Thursday, November 14, 2013

And Bob said

to my sister, when I left the room:

"Diane," and he pointed in my direction. 
"I want to kiss her... and, um, but..." 
he pointed to his mouth, 
"not working...hurt..."

"And want to..."
He touched his hand to his chest, 
"open my heart...
"my heart to her... but..."
He touched his forehead,
"...all fucked up."

I tell you, sometimes I am just filled with the saddest joy.

Tuesday, November 12, 2013


Went to mediation today and what a joke...

I am not supposed to talk about the details as it is all "confidential", i.e. "what happens in mediation stays in mediation" sort of like Las Vegas, I guess.

But I will say that the only offer the defense actually put on the table didn't even cover the amount of the insurance company's lien, not to mention attorney's fees. So we would have ended up with no money and deeply in debt...

All I can say is I am seething....

And can't believe that attorneys (for the defense) will actually look you in the eye and make up lies.

It was a really stressful day.

Tomorrow, our attorney is filing for a court date. Law has it that you can't file for a court date until you have tried mediation.  So we did that and now onto the next step.  Our attorney thinks we might get a court date set for about seven months from now...

And I am glad my sister is still here. Tomorrow, we shall go out and about and will try to have some fun and forget about this crap.

Now, I need to try to get some sleep....

Monday, November 11, 2013

Having a Wonderful Time!

Well, I can't sleep and here it is 2:30 a.m. and I need to get up at 5:30 to get ready for mediation day. So this is just a quick update:

And my goodness, I have been having fun this week! My sister and her friend are still here and we haven't been doing anything spectacular but have been going out to lunch and shopping and laughing and talking and sipping margaritas at the water's edge! And jeepers, it's just what I needed to recharge my batteries! (Chris, bless her soul, has been sitting with Bob so that I can get out and about.)

Yesterday, we had a "professional" caregiver to watch over Bob (thanks mom and dad!) and for the price, she also does "light housekeeping" so I asked her to clean my office (which hasn't been cleaned in 3 years! yikes!) and when we came home, after a day of flea marketing and a nice shrimp scampi dinner, my oak desk and file cabinet and library table were all lemon oiled and gleaming and the cobwebs were out of the corners and the dust all gone, I tell you, I feel like a queen!

For some reason, it took a lot of gumption just to ask for this little cleaning job. I guess I hate to ask for help.... but I am learning.

On Friday, I had to sit in on the deposition of the surgeon for our lawsuit. All went well and my sister and her friend stayed with Bob and cleaned Bob's room (the living room) and the bedroom while I was gone!

So my house in getting cleaned up and I am getting some much needed rest.

The only bad thing is Bob does not want go out and about. I really wanted to take him out for a day or two at the beach, but he is complaining of too much pain....

Anyway, mediation is tomorrow (or I should say-- today!)

Wish me luck!

Monday, November 4, 2013

Good News & Bad News

The bad news first --

My mom and dad, who have been coming to visit us every year at this time for the past 15 years, are not here.

This because my father is not feeling well enough to travel.

And I do miss them dearly.

Now the good news --

My sister came instead! And yesterday, she (along with her travel companion) took me out to brunch where we sat across the street from the blue bay waters and sipped mimosas (a first for me) and ate goat cheese stuffed omelettes under an umbrella at an outdoor cafe. Afterwards, we toured the city and popped into a few open houses, just to check out the real estate market. And of course, I had to show them one of our more hokey tourist attractions:

My sister & friend at, yes, The Fountain of Youth!
Anyway, I cannot remember the last time I laughed so much and so hard. Chris sat with Bob and told me that she would come as often as I needed her so that I can get out of the house, because, after this visit "it's back to jail" for me. (Her words.)

And my sister will be able to attend our mediation next week, so I won't have to do that alone.

So if this blog is quiet, you know why!

Thursday, October 31, 2013

Happy Howen!

This morning, I said to Bob, "Happy Halloween!" Then I asked him if he knew what day tomorrow is? And he said, "Birthday!"

I was wowed, because last year, when I asked him the same question, he replied "All Saints Day" which is true, but not quite the answer I was anticipating. And, last year, when I asked that question again, he had told me "Monday?"

So this year he remembers my birthday!

This morning, I gave him an "assignment" to make me a birthday card. I did this because I thought perhaps a little project like that would get him back into his drawing mode. Hoping he'd make a little surrealist birthday card drawing. He hasn't drawn a thing now for several months, mostly because he's been fixated on the pain in his foot. Anyway, I left him with a clipboard and a folded piece of paper and his graphic art pencils and I went to the kitchen to do the dishes. Pretty soon he was calling to me and he sounded quite upset. This is what he had drawn:

Bob said, "Wrong!"

I said, "Yeah, I asked for a birthday card and that's a Halloween card."

He pointed to the word "howen" that he written on the card and said, "Not right!"

"Yes, it's not right. That's not how you spell 'Halloween'. Though it's close."

He tapped his forehead and said, "My brain -- fucked up."

I told him it was OK and brought him a fresh piece of paper to start over with. I went back into the kitchen and pretty soon he was calling me again, but this time when I arrived at his side, the paper was still blank.

He said, "Pen?"

So I went and got him a pen. Which he handed back to me. I said, "I'm not making my own birthday card." And I gave him back the pen.

He said, "Um, birthday?" and insisted on handing me the pen and I handed it back to him and told him I certainly was not going to draw my own card. This went on for awhile, the pen being handed back and forth, and me getting sort of frustrated, before I finally figured out that what he wanted was for me to write down the words "Happy Birthday" so he could copy them.

Which I did. And this is what I got:

All righty. Not exactly what I was expecting, but... it's truly heartwarming.

Meanwhile, Happy Howen, everyone! And Bob has thrush (in his mouth) and his PT/INR has skyrocketed and tomorrow I will spend my birthday taking him to the doctor's office.....

Thursday, October 24, 2013

And We Have a Date...

for mediation! Next month, Nov. 11. Though the defense argued against it, saying they are not ready, the judge ruled in our favor and ordered a mediation.

And it's "court ordered" so everyone has to show up. Including me. Bob is excused because of his medical condition. So, I have to find someone to take care of Bob from 8:30 a.m. until ??? Maybe all day. Because he needs peg tube administered meds at noon, I will have hire a freaking registered nurse! jeepers... Our attorney says they will pay the bill.... but... I guess it will ultimately come out of our pocket--

Nice to know, I can only be replaced by an RN! Wow. Guess I'm worth more than I think.

I just hope the defense will come to the table with some serious offers and a willingness to negotiate...

Saturday, October 19, 2013

Back on His Feet!

It's been six months since I took Bob out of Outpatient Rehab because of his foot problem. And six months since he has actually stood up or walked on the parallel bars.  In fact, six months without any formal exercise at all. The pins from the last foot surgery were removed on Tuesday and the foot surgeon gave the OK to do some weight bearing exercises.

Of course, Bob did not want to do this, as he still insists his foot "hurts".

The pain in his toes is baffling both the foot surgeon and the pain management doc. The foot surgeon says "it should be feeling better by now" and suggests maybe Bob's got some kind of nerve pain going on. The pain management doctor thinks that Bob is "fixated" on the pain, that because of his brain damage, he has "nothing else to occupy his mind" and therefore becomes "fixed" on his foot and the pain sensation which only makes it worse....
Bob & PT, first time on his feet in six months!           

I don't know which doctor is right. But I figured, it was time to try to get him back on his feet.

"Tucking in his tush"
So I made a deal with Bob. I told him that I would drop my idea about checking him into the hospital for inpatient therapy (he absolutely does not want to do this) IF he can get up on his own two feet here at home. And he agreed to try.

Yesterday, the PT was here and I rolled Bob into the hallway by the rail. When Bob realized where we were headed, he said, "NO WAY!" and I had to stop and remind him of our deal.

Then he said, "I'll try." But I could tell he was not really into it.

Then, lo and behold,  he managed to stand up on the first try!

Both the PT and I were very impressed, because we both thought he would not do so well. I mean, it has been over six months!

The PT said, she really didn't have to help him up. "It was all Bob!" Though she did have to help him "tuck in his tush", so he wouldn't fall backward into the chair...

If looks could kill... but he did it!

Of course, he refused to try to take a step. But he did do a sit-to-stand three times!

Although he was not a happy camper and complained all through it. Which lead the PT to remark, "Well, Bob, you certainly are speaking better today!"

All in all, I am one proud wife!

Friday, October 18, 2013

Going, Going...

And almost gone. I'm talking about our next door neighbor's house, formerly known as "The Window Pisser's House", which looks like this at the moment:

And I guess we will have to start calling this place "The Window Pisser's Lot"!

What do you think? Plenty of room for a pool for aqua therapy for Bob!

Though the word on the street, via our self-described "neighborhood busy-body" is that the owner of the lot is going donate it to a non-profit organization for use as either a rehab facility or half-way house.

We'll see what happens.

Time's they are a-changing...

Sunday, October 13, 2013

soooooo tired...

This week, we were coming home from a doctor's appointment on the wheelchair transport, when the driver asks me, "Is he OK?" (meaning Bob) and I turn to see Bob sort of leaning to the side of his wheelchair, his left hip raised off the seat. And I think, oh shit, and I mean that quite literally because that is what he was doing, right there, in his wheelchair, in the back of this transport van and we still had 20 miles to go before we got home.

We get home and, you know, it is nearly impossible to change a diaper in a wheelchair, so I tell Bob that I will get him into bed and then change it. So poor Bob has to slideboard onto the bed, meaning there is going to be an even bigger mess in his pants, but I get him onto the bed and get a washable bed pad under him and when I cut off his Depends, there's nothing there. I am thinking huh? and then I realize there is a rock hard stool stuck half-in and half-out, so I have to pluck that thing out, plus dig out some more and give him a suppository because there's still stuff stuck up there, then spend the night cleaning up diarrhea squirts.

And I tell you, I am getting sooooo tired of all of this.

The next day, we have a "day off" meaning no appointments to go to, and Bob is still complaining of constipation, so I give him a laxative and that afternoon, boom, it hits him and now I've got a bucket of diarrhea that soaked right through the Depends into his shorts and onto the bed pad. And while pulling off his shorts, that stuff is getting all over his legs and my arms and everywhere. Then I spend the rest of the afternoon cleaning up this stuff and doing an extra load of laundry.

And really, I am getting so tired. Sooooo very very tired. I wake up tired. I walk around all day feeling tired. My legs ache, all the way to the bone. In fact, I think my bones are even aching. And I've taken to setting the feeding pump rate a little lower at night so that it's done at 7:00 a.m. instead of 6:00 a.m. and I can grab an extra hour of sleep in the morning, and I still am tired, and of course that puts me off schedule for the whole day.

Yesterday was Saturday, so another "day off", and I go into my office in the morning, thinking I might blog, though I'm so tired I haven't a clue what to blog about, and I find that one of the cats has vomited all over my desk. I mean, it was everywhere, down the front of my computer printer and splattered all the way across my desk top and heck, it even got into my little desk top electric fan and I had to clean that out with a Q-tip. So I'm cleaning up all this cat puke and I look up, into Bob's room, and there's water on the floor under Bob's bed and I'm thinking what? So I go out to check, and here the darn catheter bag as sprung a leak and it's not water, it's urine. So now I'm not only cleaning up puke, but also pee....

I tell you, I am sooooooo very tired. It doesn't help that this is shaking down to be one of those months with about six billion doctor's appointments crammed onto the calendar.

I've been taking care of Bob and everything else, all by myself, for nearly three years now, without a break, without a vacation, without even a day off, and I am really, really, very tired.

A year ago, someone asked me what I would do if I had the whole day to myself. A full 24 hours to do anything I wanted. And I told them I would spend the whole day in bed. That was a year ago. And right now, I could do with a whole week in bed... maybe two.

I am seriously considering asking Bob's primary care doctor if there is a way we can admit Bob into the skilled nursing unit over at the charity hospital for a few weeks. They have PT/ST/OT over there. He could get started back on therapy. But I'm not sure if the insurance will approve it, or the doctor will order it, or Bob will even want to do it.  I'm not sure if financial aid will pay for the co-pay, and that would be the only way we could afford it. But jeepers, I really, really need a break and just let someone else take care of him for awhile. Of course, this would have to happen after Bob's blasted foot heals up from the surgery. Because first, he will need to be able to put weight on that foot, then it would be great for him to start doing some sort of exercise/therapy. With the exception of the home PT who stretches his neck, he hasn't had any real PT since early last spring. And I tell you, his legs are just wasting way. I am thinking, we could start him on inpatient therapy and move to home health therapy and then to outpatient rehab. He would be starting over, from square one, but truth be told, he needs it. This foot/dystonia thing has really taken a toll on him.

Then, again, I worry that if I put him a hospital, will he just come down with infection after infection? Or come down with pneumonia. And will the nurses screw up his meds? Or worse? Because after what we've been through, I have a hard time trusting hospital staff to do their jobs.

So right now, it's just an idea...

And tomorrow, I have to get up at 5:00 a.m. because we have to make a 10:30 transport for another doctor's appointment plus the blood draw guy is due at 8:30 then the home health nurse has to do a re-eval after 3:00 p.m. for his feeding tube replacement--- and jeepers!

Have I mentioned how very very tired I am?

Monday, October 7, 2013

Post Traumatic Interrogation Syndrome

I'm not sure if there is such a thing as that, but if there is, I am certainly suffering from it this past week. I keep replaying the deposition, over and over, in my mind. And worse, I keep replaying the events of the morning of October 21, 2010. Over and over. Like some nightmarish horror movie. And I can't stop thinking about this stuff. And I am shaky and trembling and prone to fits of crying. I had thought once the depositions were over that I would be fine. But I am not. Instead, I am a complete basket case.

It doesn't help that once again it is October and the third anniversary of the stroke will be soon upon us.

Or that Bob is still constantly complaining about foot pain.

And I am strung out. Exhausted, even.

I go about my daily duties and I cannot stop thinking about the morning of October 21, 2010. And I can't stop seeing that nurse, in my mind, that nurse wearing a starched white uniform -- like a throwback from the 1970's -- like some kind of Nurse Ratched, complete with the little hat. Because truly, that's what she was wearing that morning. With a glittery silver angel pinned to her bosom. White sheer stockings. White shoes. Hair tied in a bun.

And me, running after that nurse, shouting: Something's terribly wrong with my husband!

And that nurse saying, "Isn't your husband always like this?" and "I didn't think he seemed right this morning."

And at the deposition, my attorney touching me gently on the shoulder, saying, You're shaking. Do you want to take a break?

Me: No, let's please just get this over with.

And the questions being hurled at me, like What doctors, hospitals, clinics did your husband visit in 2005? In 2006? In 2007? And on and on, through the years. And I'm supposed to remember this stuff.

And feeling like a criminal. Like Bob was on trial. Like Bob had done something wrong instead of the nurses.

Then having to go through the events of October 21. Telling my story. Detail by detail. Down to the white starched uniform. Down to the time on the clock. Down to each person I spoke to and what they said and the partially dissolved pills falling out of Bob's mouth when he tried to speak. How he could only make noises. How he couldn't move. The terrified look in his eyes. How the nurse had just propped him up in bed and walked away. Reliving the whole thing. Moment by moment. What did you do next? When did you next see the doctor? What did he say? When did you next see your husband? What was his condition? Then what did you do? And breaking down, sobbing. Sobbing like a broken child. Right there in front of lawyers and strangers and a video recorder...

I do begin to wonder if I'm ever going to get over this.

We have a busy schedule this week with three different doctors' appointments starting with Pain Management today. I am hoping our busy schedule will help me get my mind off this stuff.

Thursday, October 3, 2013

Survived the Day

Well, our depositions are done and over and I must say it's a relief to have that behind me. But what a stressful day. I was grilled for nearly five hours and during the last hour, I broke down, several times, crying like a baby and went through nearly a whole box of tissue. Our attorney told me, afterward, that I did an excellent job and he couldn't be happier.

Bob's deposition lasted all about 10 minutes. It took longer to set up the video recorder than it did to question him. Then there was a very awkward moment when he was asked to raise his right hand to swear to tell the truth, and, of course, his right arm/hand are completely paralyzed, so that was impossible for him to do. So everyone was waiting for Bob to raise his right hand, and (I could tell) Bob was thinking huh? and I finally spoke up and said "he can't", and they finally asked him raise the left one. Then, though he really tried, he pretty much couldn't answer any of the questions, or answered them incorrectly.

All I can say is I'm glad it's over. And maybe life can get back to "normal" (whatever that is!) now.

Sunday, September 29, 2013

How to Hide a Bag of Pee

When Bob received his first prescription for condom catheters, the medical supply company sent the typical Medicare approved 35 condoms, 2 leg bags and 2 bedside bags. The leg bags strapped to the thigh with latex bands. These worked fine in the chilly winter months, when Bob wore long pants, but I began to worry how this was going to look in the warmer months when he wore shorts.

I mean, who wants to go around in public with a bag of pee strapped to your thigh? Because, truth be told, it is not always convenient or easy to empty it right away. And even empty, this thing is ugly...

The leg bag holder as supplied by Medicare.

So I asked around, first calling the medical supply company, then posting on caregiver forums, but the only solutions out there were "don't wear shorts" or "buy really baggy long shorts like the teenagers wear" or one clever lady gave me instructions on how to sew a cath bag holder that would attach to a belt.

None of these solutions worked for Bob, because I wouldn't dream of making him wear long pants in the hot summer months, nor did I want to see him clad like some teenage boy. And then there is the fact that I am not so clever with a needle and thread.

Finally, I found a working solution and this is what we've been using all summer long:

Bob's new leg bag holder, by CareFix

It's called a "Carebag" and made by a company called CareFix. I found Bob's online at Allegro Medical for around $8.50.  It's simply a stretchy fabric tube that slips over the leg with a pocket for the leg bag to fit into. I know it's not perfect, as you can still see it, but so much better than looking at a clear plastic bag of pee! So far, it's worked for us.

It was only recently, when Bob was in the recovery area of Outpatient Surgery, that one of the nurses there became so utterly thrilled at this Carebag that she called not one, not two, but three different nurses to Bob's bedside to look at his leg bag holder. Then, she brought in the woman who orders medical supplies and showed it to her. She took down the name of company and the name of the product and told me that she was going to look into ordering these for the patients they send home with catheters.

After that incident, I thought I'd share this information here, for those caregivers or cath wearers out there who may be looking for a way to hide a leg bag or an alternative to wearing the insurance paid for one with the uncomfortable straps.

Thursday, September 26, 2013

Preparing for Depositions

So yesterday, our attorney met with us to "prepare" us for upcoming depositions. This meeting was not at all what I expected.

I had, of course, done some research on the internet and had run across something like this: "your attorney will meet with you before your deposition, brief you on all the possible questions you may be asked and instruct you on how to properly answer them". I also had watched several attorney-made YouTube instruction videos for personal injury plaintiffs, which informed me that you should answer all questions with the shortest possible answer, and you should be careful not to give out "too much information" as such information can be used against you. One example I remember was this: If you are asked "do you know what time it is?", you're supposed to look at your watch and say "Yes." DO NOT say "Yes, it's 1:00" because that is giving away too much information. Also, that you should pause before answering any question to allow time for your attorney to object to the question. Also, that you should not look at your attorney during the process as that will make you look unsure of your answer. And then there was all sorts of stuff about how the defense will try to trip you up and trick you into saying something incriminating or how they may turn your words around so that it sounds incriminating, or take your words out of context and use them against you, etc. etc.

Now you know why I was worried about this.

Anyway, so our attorney arrives and we first go over the schedule for that day. The defense team will be coming, first, to our house to depose Bob. This will probably last all of about five minutes, once the defense realizes that Bob, with his aphasia, isn't going to be able to answer many questions. Afterward, we will leave Bob at home with Chris and travel to a downtown office where I will be questioned for 2-3 hours.

He said to expect to be asked about three things: Bob's medical condition pre-stroke, the events of the morning of Oct. 21, and Bob's continuing medical needs/care since then.

He told me to just be calm and truthful and friendly. He told me not to worry about the defense lawyer as the "only bully in the room" will be him, our attorney. And he will be my "protector". And even though the defense is calling for this deposition, "we are in the driver's seat".

He said, the main thing he wants to achieve at the deposition is that the defense's lawyer finds us to be an "average American couple" who were struck by this tragedy, which is exactly who we are. So, he tells me, "just be yourself".

And that was it. That was our whole preparation. Like I said, not at all what I expected. And I must admit our attorney is still very confident about the whole thing and that, alone, makes me feel much calmer.

Friday, September 20, 2013

The Green Machine & The Leaking Air Conditioner

Last Saturday, Chris came by to sit with Bob so I could do my usual running around, which means running to pharmacies to track down Bob's pain patches, and then to the bank, gas station, grocery store and I also wanted to stop by another store to look for some clothes as I'm supposed to dress "business casual" for this deposition and for the last three years I've been living "casual casual" and when I went to my closet to see what I had for "business casual" nothing fit because GA! I've gained weight. And how the hell did that happen?

So I get to the pharmacy and when I come out, The Green Machine starts giving me trouble. She just won't start. Now, she has given me this trouble before, but usually it's just a fluke and then she magically cures herself and off we go. But here I am in the parking lot of the pharmacy with ten thousand things to do and I'm trying to start her and all she does is roo roo roo, then clunk. Finally, I get her going, and head to the next place, which is a Walmart, and I try on some clothes, but everything looks terrible and good grief, when did I get so fat? and old? and why do they have such bright darn lights in these fitting rooms that make everyone look older and fatter and I leave and again The Green Machine goes roo rooo roooo, clunk. But she starts on the second try.

So I go to another store and spend a half hour trying on some clothes, which all look horrible, and by  now I'm freaking out because I'm not going to have a thing to wear for the deposition and will probably have to go there buck naked and I leave that store empty handed, get in The Green Machine who goes rooo rooo roooooo, roooooooo, clunk. After trying her the fourth time, and she still won't start, I break down in the car and just cry, because how the hell am I going to get home? Not to mention get back to the pharmacy to pick up Bob's patches and what about the grocery store and bank and the gas station? And I just cry my eyes out because right then and there I hate my life, I hate myself and I especially hate this darn car!

On the sixth or seventh try -- I lost count, finally The Green Machines goes vrooom! and she starts and I tell you there is not a better sound in the world than a car starting after she won't start six or seven times. And I figure I better head home before I get stranded somewhere, but first I go the pharmacy and thank god for drive-up windows and pick up Bob's pain patches. And I make it home. But I am shook up and frazzled.

So I call Bubba, our mechanic, and leave message on his answering machine. And that's when I notice that the window air conditioner is leaking water inside the house.

So I call a handyman guy I used before who had told me that he once worked for an A/C service and knows how to fix air conditioners, and I get his message machine and I leave a message. Then I call the lawn guy because our grass needs to be cut. And all of this was on Saturday.

On Sunday morning, the only one who had got back to me was the lawn guy. On Sunday night, Bubba calls and says he can take The Green Machine in on Wednesday but it sounds like an electrical problem and it might take a few days to figure it out. But if I can get it to him on Wednesday morning, he can drive me back home. But I still haven't heard from the handyman. So I call him back and leave another message.

Meanwhile, the air conditioner is really leaking and paint is bubbling up on the plaster wall. I've got towels shoved under it and a bucket to catch the water under that. I figure something has to be clogged and the water that usually drains outside the house is coming inside. So I go outside and check the drain hole but it seems clear and then I go back inside the house and take the cover of the unit off and I can see the water standing in the drain pan. So I get out one of Bob's feeding tube syringes and with that I syringe out almost 10 ounces of water. Then I spray some of the foam air conditioner cleaner all over the thing and go outside and spray foam up the drain hole and hope this will help. Then I empty the bucket and replace it and put down fresh towels.

By Monday, the handyman has still not called me back. And I'm getting really worried about the plaster wall and things like mold and not to mention the electric outlet on that baseboard. But it's 90 some degrees out and I can't turn the darn thing off because Bob would be just too uncomfortable and it's the only air conditioner we have. And Bob is already miserable complaining about his foot and now he's begging me to "chop it off". Jeepers, he's driving me a up a tree.

So I get out the phone book and call a few places that repair air conditioners, only to find that they won't even touch a window unit. I finally find one place that will come out but they tell me it will cost $79 just to diagnose the problem and they are backed-up on "emergencies" and can't get out to the house for two weeks. And I'm thinking, it's probably just a problem with the drain pan because the unit is cooling and what I really need is a cheaper person to take a look at it, like a handyman, so I call the handyman guy and leave another, more frantic, message. Then I find a handyman listed on craigslist and I call him too and leave a message.

By Tuesday, neither handyman has called me back and that's when I happen to notice the two handymen who were working next door renovating that building. I hadn't seen them in awhile since they finished the project. But there they were. So I went over and asked them if they could help me out and told them I'd be happy to pay them something for their time. And they came over and started taking the air conditioner apart and just got it opened up when their cell phone rang and it was their boss needing them right away, so they put the air conditioner back together and told me they would be over again after 4:00 p.m. At 4:00 p.m., one of the guys shows up and tells me that he doesn't think they can do it, but they have a friend who knows air conditioners and he will be over in the morning between 9:30 and 10:00 a.m. to take a look at it. Which is great, except I'm suppose to take The Green Machine to Bubba on Wednesday morning. So I call Bubba to see if I can come earlier, that is, provided I can get the car started! And he says yes, so I call Chris to see if she can come earlier to sit with Bob and she says yes.

Meanwhile, the a/c unit is getting worse and worse, in fact, it sounds like rain in the house. I keep syringing out water with the feeding tube syringe but it seems the water supply is endless. So I get out one of Bob's intermittent catheterization kits and I'm thinking if I can run the catheter up the drain hole outside and attach a feeding tube syringe to the other end, maybe, just maybe, I can pull some more water out of the back of the unit. I tell you, I can get very creative with our medical supplies. But alas, it did not work.

Wednesday morning rolls around and Chris arrives at 8:15 and I tell her that Bob's home draw tech is due at 9:00 and to let him in, he knows what to do. And I tell her that a guy should show up between 9:30 and 10:00 to look at the air conditioner, but hopefully I'll be back by then. So I go out to The Green Machine and say prayer before starting her and she goes roooo rooooooo roooooo roooooo then vroooom! And thank god, she starts. I check the gas gauge because I never did get to the gas station and it says I have half a tank, but when I'm half-way to Bubba's, I look down and gas gauge reads 1/4 tank, and I'm thinking what? because how on earth could I be using so much gas? And I glance down again and now the gauge reads 1/8 tank and I see it slowly sinking all the way down to empty...

But I make it to Bubba's and park the car in his drive and shut off the engine. Bubba comes out and tells me to show him what it's doing. So I start the car back up, and it goes roooo, rooooo, and Bubba shouts TURN IT OFF! Then he tells me to never, never push it to start because that could start an electrical fire under the hood and that could blow your engine up!! Jeepers. And here I've been doing that all this time. So he has me do it again, but not to push it, and of course The Green Machine just goes roo, and he has me shut it off. And a few more tries at this, but The Green Machine just won't start and the problem is that my car is blocking Bubba's car in the driveway, so he tells me to go ahead and push it so we can move it out of the way, so I do, as Bubba watches with a rather horrified look on his face, and The Green Machine goes rooooo rooooo roooooooooooooOOOOO and then VROOOOM!  So I manage to get the car parked on the other side of his house.

Then Bubba drove me home, and I know this post is getting long! so no time to mention that Bubba drives like a bat outta hell and he took the Interstate and I was pretty much scared shitless the whole way. But he does have a pretty cool new Dodge Challenger, which he assures me is "certified safe at 150 mph".

All righty. I made it home, in one piece. The home draw technician arrived, but the air conditioner guy was a total no show. By the afternoon, I go on the internet and google "window a/c repair" and find a local website that actually advertises that they service window units. So I call them up and am transferred to a gal who tells me that they just decided to not service window units this very week, because usually the units are so old, it's cheaper to replace them. I tell her that my unit is only five years old and it's cooling perfectly but it's leaking water in the house. She says she'll have to ask the boss if he wants to do it and call me back. She calls back an hour later and tells me they will send someone out to look at it that afternoon and the service charge is $89.00 but that includes the first hour of labor. So I figured I'd better bite the bullet and pray it won't take more than an hour to fix.

So finally the a/c guy shows up and he takes a look at the unit and tells me first, that it would be cheaper to just buy a new a/c unit and you get a good little 500 BTU for around $200, but I tell him that this one is 12,000 BTU and we need that much to cool this whole house. And he tells me the problem is that it needs a good cleaning, with all the humidity this jelly-like junk forms and clogs up the drain pan and a good cleaning will cost $200 and he will have to remove the unit and take it with him. And I'm like, shit. Because Bob will be uncomfortable in this heat, and I tell him that in so many words. Then he asks if I have some bleach? And something like a turkey baster. I do and I bring him bleach and the feeding tube syringe and he syringes bleach into the drain pan and says that should break up the jelly-like junk and then he says I should spray some coil cleaner on the coils and I say I have coil cleaning spray and I bring him the bottle and he sprays coil cleaner on the coils. And I watch him, thinking this is going to cost $89 and I could've done this myself, if I had known about the bleach thing. He finishes spraying the coils and asks me how much I was told the service charge would be? And I tell him $89. And he tells me, just make it $40. And he tells me that if this doesn't work, to call the shop tomorrow and he'll come out with another guy and they can take the unit out of the window and clean it here on the grass. So I ask him his name and he tells me that he is the owner of the company. Which is why he could give me a discount. And he tells me, "looks like you have your hands full here" meaning Bob. And I tell him about Bob's stroke and turns out his wife had a stroke last year. We talk for awhile, and he leaves and of course the a/c unit starts leaking again. But I take off the cover and syringe out more water and syringe in some more bleach and spray the coils again and it stops leaking.

Then Bubba calls with the good news that it's just the starter and he has replaced that and will bring The Green Machine home. Then he tells me that the u-joint is "going" and the brake pads have "dry rot" plus the gas gauge is no longer working. But I'll worry about that another day.

So the a/c is no longer leaking and The Green Machine is home and tomorrow is Saturday again and Chris will be here so I can finish doing my running.  I do hope things go better next week.

Thursday, September 19, 2013

Two New Books for Stroke Survivors & Their Loved Ones

I recently received a message from one of my blog readers, Tom Willet, who is a co-author of two newly published books for stroke survivors and their families. Tom co-authored the books, Stroke: The Road to Recovery and Understanding Stroke, with his father, Dr. F. Douglas Prillaman, who is a stroke survivor himself.

Click here for a delightful glimpse at some sample chapters and more information.

PS: This has been a stress-filled week for me, more on that later! Today, it's off to another darn doctor's appointment, so no time to write. Stay tuned...

Monday, September 16, 2013

A Good Day to Reminisce

It was a cold January night in 1994, when a group of my co-workers from the college where I worked invited me to a basketball game. Now I'm not one much for basketball, but since my divorce, I had made a vow to never decline a social invitation, so I went.  After the game, two of us, Kelly and I, decided to stop off for a drink at a nearby bar.

It was freezing out and the bar was packed, but we managed to find a couple stools toward the end of the room. It was there, after we ordered our drinks, that I recognized a woman who I had once counseled at the women's shelter. I went over to talk to her, while Kelly struck up a conversation with someone else.  Then someone tapped me on the shoulder. I turned and it was Kelly, who said, "Don't look now, but there's a gorgeous guy in a tuxedo right behind you."

I did what any red-blooded single/divorced woman does, I spun around and looked. And indeed, there was a gorgeous, tall, blonde guy in a tuxedo, leaning against the wall behind us. I recognized him immediately. I said, "Oh, I know him," and turned back to the bar.

Kelly said, "You do not."

"Sure, he was student."

She said, "No way. Believe me, I would've noticed a guy like that."

"That guy was in Commercial Art. Just graduated last semester. Can't believe you never noticed him."

"You're lying."

"He worked on the school newspaper. The office right next to mine. He used to come to my desk to pick up the office key if it was locked."

She said, "Prove it!" Because she really didn't believe me. Kelly worked in the General Education Department and I worked in Admissions/Counseling. So pretty much every student would have been in our offices at least once. But I did remember this guy, because he was so good looking, and I remember asking the editor of the school paper about him and was told that he was married, so I immediately lost interest. But for the life of me, that night, I could not remember his name.

Anyway, in order to "prove it" to Kelly, I went over to the gorgeous guy leaning against the wall, wearing a tuxedo, and struck up conversation while Kelly watched skeptically from the distance.

Bob's ad in the personal column. 1994
and yes, I saved it, all these years...
I asked him what he had been doing since graduation and he told me that he hadn't found a full-time job but was doing some freelancing. I asked him what was up with the fancy get-up and he told me that he had been an usher at a wedding earlier that day, but got bored at the reception because every one was coupled up, married or with a date, and he was single so he left.  And I thought single, hmmm.... and he told me about a "blind date" he had the night before and how everything had gone terribly wrong. And I said, "Blind date? Don't tell me, you answered one of those personal ads?" and he said, no, in fact it was he that had run a personal ad in the newspaper. And I gave him a hard time about that, because, truthfully, why would a guy so good looking have to advertise for a date? And he told me he was tired of meeting women in bars and wanted a real relationship. And I asked him what his personal ad said and he wouldn't tell me.

Then he handed me his business card and told me to look in tomorrow's newspaper and when I figured out which ad was his ad, give him a call. Then he left. And I stood there, kind of dazed, holding his business card and Kelly came over to me and asked what he had said, and I told her, and she said, well, you gonna call him? And I said, I didn't know because the whole thing was sort of weird and he probably wasn't even interested in me, and she said, don't be silly, he wouldn't have given you his card if he wasn't interested.

So the next day, I got the newspaper and went through all the personals and I found two ads that fit his description, you know, height, blonde hair/blue eyes, but one of those advertised himself as a "professional Catholic" and I'm wasn't even sure what a "professional Catholic" was but I certainly didn't want to date one.  And I almost didn't call him.

Then Kelly called me and asked, "Did you call him?" and when I told her I was too scared, she told me not to be stupid.

So finally, I got the nerve up and dialed the phone. And I had no clue what to say. And I was nervous as all get-out. He answered the phone and I said, "Hello! I'd like to speak to the Handsome DM, 34, 6'3" blonde?"

He didn't say a word. And I thought, jeepers, I have the wrong ad! but I continued reading the ad out loud because, truth be told, I didn't know what else to do. And I got all the way to the "intelligent conversation" when he said, "Is this Julie?"

And I nearly hung up the phone. Because I'm not "Julie" and how many women did he hand his card out to last night???

But I didn't hang up the phone and he laughed when I told him that my name was Diane, because he too had forgotten my name and was too embarrassed to tell me that last night and we talked for over two hours straight and made a date for the following week and the rest, as they say, is history.

Anyway, that was how Bob and I "met" and today is our 19th wedding anniversary and we are not celebrating because Bob is still recovering from surgery. But I am in a reflective mood and it's nice to reminisce....

Saturday, September 14, 2013

Finally, Surgery

X-ray of Bob's foot after first surgery.
And yes, that screw is permanent.
And why does this look like the Dark Ages?
Believe me, when I first saw this, I just couldn't believe it...
OK, maybe it's just me --- but a big ol' screw? yikes
Yesterday, Bob had his second foot surgery and what a relief to have this over with and done. And yes, yesterday was Friday the 13th. Perhaps not the most auspicious day for surgery, but it was the first opening they had available and I snatched it up.

The surgery center was deadly quiet that day... I wonder why? ha! The doctor was the same as the last surgery but we had a different, nicer anesthesiologist who didn't scare me half to death like the last one.

I hate to say, the nurse was another story. When she found out that Bob had to be lifted from the wheelchair to the bed, she blew a head gasket. Told me that we shouldn't even be there and if we ever, ever come back again, I will have to bring Bob there on an ambulance so that paramedics could transfer him from an ambulance stretcher to the bed. Because it's too much work for them to lift him from the wheelchair into bed!

Jeepers. And to think we live right across the street from the place... Like I'm going to pay 200 bucks a pop for an ambulance to drive him across the street, so a total of $400 plus their $250 co-pay, plus whatever they will bill over that--- because it's too much work for them to lift him, and, by the way, they just don't have the right darn equipment....

Then, Bob became very distraught when he found out that the surgeon was only going to straighten his two little toes and not chop them off, as he wanted...

He was inconsolable about that both pre and post-op. And complaining constantly. And glaring at me.

The doctor refused to order any more pain medication, telling me that Bob was on "enough" pain medication all ready. Which also didn't sit well with Bob. Or me, for that matter.

Then, I had to push him home in the pouring rain...

But all in all, the surgery went well. And it's over. And I am glad and exhausted....

Monday, September 9, 2013

Drowning in Paperwork

On Friday, I received a package from our attorney containing over 500 pages of Bob's medical records and was told to "review carefully" for my upcoming deposition.

I just spent the entire weekend reading this stuff... jeepers. How many times do I have relive this?

The deposition is scheduled for Oct. 1.

I must admit, I am a bit nervous. The defense also plans to "depose" Bob, and that should be an interesting affair with his aphasia...

Other than that, surgery is now scheduled for the 13th -- if that urine test comes back clean! And we are off to Pain Management today.

Wednesday, September 4, 2013

Surgery Cancelled Again

I should have seen this one coming, but I was still hoping the foot surgery could be done on Friday.

But alas, the doctor wants another urine sample after the five day dose of antibiotics.

And all I know is that I am running out of "clean" (unused) cath bags to catch those sterile samples. And I am tired of shooting Bob up with lovenox for no reason, but the doctor said to continue with the lovenox and keep him off warfarin because he didn't see any sense in putting him back on warfarin just to take him off of it again....

Anyway, no surgery on Friday. Bob was in tears at this news.

More sordid details on how this all came about in the previous post.

All I can say is: grrrrr..... 

Tuesday, September 3, 2013

More Axes to Wield...

On Friday morning, I talked with the nurse at Bob's primary care doctor's office. She had gotten "some" of the pre-op test results back and was waiting to discuss those results with the doctor before giving me the "go  ahead" to take Bob off the warfarin and start the heparin bridge that weekend.

She said she'd call me back.

By 4:30 p.m., I hadn't heard from her so called the office and was connected to her voice mail. I left a message and told her that I was waiting for her call. I wasn't too concerned, even though it was late in the day on the Friday before the Labor Day Weekend, because I've dealt with this nurse before and she always follows through, even if it is after hours.

By 6:00 p.m., I was getting concerned, because I still had not heard from the nurse and it is so unlike her not to follow through. So I called the doctor's office. Or, I should say, I tried to call the doctor's office but I couldn't get through because our phone was dead.

We have an old fashion land line telephone. So, first I checked the connections in the back of our phone. Then I checked the connections at the phone jack. Everything seemed to be order, but I still had no dial tone. I then got out our "back-up emergency" phone and connected that to the jack. Still no dial tone. Then, I went into my office and found I had no DSL on my computer and the jack going to the modem was also dead.

Anyway, that explains why the nurse didn't call. Because we had no phone service. I wasn't horribly over concerned as I had a "back up" plan to talk with the lab tech on Sunday, and he could tell me the test results, if nothing else.

So I got out my crappy little pre-paid minutes Tracfone, which I use for emergencies and also take with me when I am out of the house and Bob is with a caregiver, so that I can be contacted if there is any problem. I call the phone company.

The phone company runs some kind of test on the line and tells me that it looks like it's a problem on the inside of the house and that it would be my responsibility to fix because I haven't purchased the "maintenance plan" unless I wanted to hire their overpriced service. I tell the customer representative that it would be weird if the problem was in the house, because both phone jacks are dead, and those jacks are in two different rooms and have separate phone lines running to the outside box. So the representative tells me to go outside and open the phone company's box and test the phone jack in the box. Which I do and there is no dial tone there either.

So the phone company rep says it looks like it's a problem outside the house, and they will send a service tech out, but unfortunately it is the Friday before the Labor Day Weekend and they will not be able to get out to our house until Tuesday.

And I'm thinking, what???!! Tuesday? You've got to be kidding!  I tell the rep that I cannot deal with no phone, NO INTERNET until Tuesday, and they must have someone working on the weekend-- And she (the rep) tells me that they only have a "skeleton crew" because of the holiday and that we are NOT "high priority". So I tell her that my husband is severely disabled and, in fact, this stupid phone service cut off right when I was waiting for a call from his doctor's office-- And she asks me what phone am I calling her on? I tell her it's my crappy little Tracfone, and she says she can "call forward" our regular number to my Tracfone if I want her too. So I tell her to do it. Even though this means that I will have to pay for every call we get. I give her the number. And she says that "maybe" the skeleton crew will get to me this weekend, depending on how busy they are with, you know, higher priority customers. By now, I'm rather fuming, and I have a funny feeling, so I ask her to please repeat the phone number that she's call forwarding our landline to, and she reads it to me, and, of course, it's the wrong number.  So I tell her the right number and have her repeat it back. Then she asks if there is anything else she can do for me today, and I tell her to please get one of those skeleton crews out here this weekend. She says, she'll try, but can't guarantee it.

So, after I get off the phone with the phone company, I decide to call the doctor's office, on the off-chance that anyone is still there. But I get their answering service, and I explain to them that I was waiting for a call from the nurse when something happened to our phone service. She says she can't page a nurse, but she can page the doctor on call, which is not Bob's primary care, but The Big Cheese doctor (the one who owns the clinic) and he might be able to help me. So I'm thinking well, The Big Cheese should have access to patient records and he can look and see if the nurse left any notes on Bob's chart. So, I have her page The Cheese and, of course, when he finally calls me I am in the bathroom, so miss his call. I get his voice mail which basically says "This is The Big Cheese, call me back" but I can't call him back because his phone has come up as "private" on the Tracfone, so I call the answering service back and explain to them that I missed the darn call and she says she'll page The Cheese again. And I wait.

Finally, at 10:30 p.m., The Cheese calls and when I explain the whole situation to him, he tells me just to stop the warfarin on Sunday and start the lovenox on Monday as planned and not to worry about it.... And I don't believe he even looked anything up on Bob's chart....

Saturday rolls around and I am going nuts without my computer (though I am getting our calls forwarded and creditors are now eating up my Tracfone minutes). I don't see any "skeletons" from the "skeleton crew" in our yard, so I call the phone company for a status update and the automated message tells me that we are scheduled for service on Wednesday NOT Tuesday. Which really ticks me off, so I get a hold of an actual representative and ask her why we are scheduled for Wednesday and not Tuesday and I am told, once again, that we are NOT high priority and so we've been shifted to Wednesday because of the holiday backlog. By now, I am steaming, and I tell her that my husband is disabled and we need our phone service, and she tells me that she didn't know my husband was disabled and she will push us back up to Tuesday service as a "medical priority". And I ask about the "skeleton crew" and she says she's very sorry but the skeletons are too busy this weekend, and someone will be here on Tuesday.

On Sunday, I call the lab tech and get his answering service and leave a message reminding him to contact me. This is exactly what the lab tech told me to do. By Sunday afternoon, the lab tech still has not called me back so I call again and leave another message. And another message. And he never calls back.

So Sunday night, I take Bob off the warfarin. And on Monday I start the lovenox.

This morning, the phone company serviceman arrives and finds that  "Copper thieves" had cut our phone line down and stolen it for scrap.

Then, also this morning,  the Walgreens delivery guy shows up with a bottle of antibiotics. One that had been sitting at the store since Friday when the primary care doctor called it in, but Walgreens never bothered to notify me about it.

So I call the nurse and ask her what's up with this antibiotic? She says that she tried to call me on Friday but kept getting a busy signal, that the doctor had ordered a five day antibiotic so that Bob could still have his surgery on Friday, but that prescription should have been started on Saturday and she couldn't believe that Walgreens didn't call and inform us of a prescription ready to be picked up.

So it comes down to: the nurse couldn't call and inform me of the doctor's order because a copper thief cut down our phone line to sell for scrap. Walgreens didn't bother to inform us of the prescription and the landline WAS call forwarded but instead, just tossed the antibiotics in the delivery bin for Tuesday. And The Big Cheese doctor didn't bother to look at Bob's chart.

And yes, I am sharpening my ax... though the question is, who do I start with? Probably the copper thief, then The Cheese, then Walgreens, then maybe the lab tech, and finally the phone company just to show them who is High Priority here!  Bah ha ha!

We still don't know if surgery is on or off for Friday...

And lord almighty, why do I feel like I'm living in a really, really stupid soap opera...?

But at least I'm back on the internet!

Friday, August 30, 2013

Preparing for Another Surgery (I hope)

Bob's second foot surgery was scheduled for August 26, but was canceled by the foot surgeon as the pre-op tests picked up a urinary tract infection. This after the primary care doctor gave the "go ahead" for the surgery. The primary care doctor didn't think a UTI was reason to cancel surgery, but the foot surgeon nixed the whole idea. Bob's been on antibiotics since and I just collected another urine sample for the lab yesterday.

Now, this surgery is scheduled for next week, September 6th. If the urine sample comes out clean...

Trouble is, we won't know if the urine sample is clean until the lab results come back and that takes 72 hours. And we are approaching a weekend and a holiday.

And I'm supposed to take him off warfarin five days in advance. Then start the Lovenox shots again. Which would all start on Sunday.

When I talked to the nurse at the doctor's office about this dilemma, her suggestion was to reschedule the surgery, again.

Which I don't want to do. I want this surgery done and over with. I want Bob "back to normal" and free of pain as soon as possible.

Bob's foot, between surgeries. Three straight toes, two still curled.

So I talked to the lab tech and he suggested I call his office on Sunday morning, leave a message with the answering service which will contact him, and then he'll call the lab and get the results for me.

Let's pray this all works. Let's pray that sample is "clean". Because I'm at my wit's end.

I can't even begin to explain how trying this blasted foot problem has been.  How stressful the days and nights have been for me. How much pain Bob is in. How every single day, the morning starts off with Bob complaining and crying about that foot and the pain seems to worsen as the day goes on. And I am constantly applying ice or adjusting pillows or giving extra pain meds. How this problem has wrecked all the good things he was accomplishing in therapy. And how weak he's become because of that. How everytime we see a doctor, any doctor, Bob begs and pleads for them to "chop it off" and when they say they cannot chop his foot off, he starts crying, shaking all over and saying "pain, pain, pain" over and over and over. How those scenes bring me to tears. How some days, Bob refuses even to get out of bed because the pain is so great. And this has been going on for months now...

And I am tired. Very tired of it all. And just want the whole thing over with.

I tell you, if we don't get this surgery soon, I'll be the one wielding the axe.... and not to chop off Bob's foot, but aimed toward a certain doctor's neck!

Sunday, August 25, 2013

The Pleasures of Dealing with Bureaucracy

Earlier this week, Bob received a glossy brochure in the mail from the insurance company. The brochure read: Thousands of United Healthcare Medicare Advantage members save $104.90 a month in Medicare Part B Premiums! It's easy to see if you qualify! Then, in two large colored boxes:

To qualify if you're single:
Your gross monthly income must be under $1,456.25 with less than $13,300.00 in assets.

To qualify as a couple:
Your gross monthly income must be under $1,958.75 with less than $26, 5840 in assets.

And I'm reading this, thinking, wow, he now qualifies for this! I had heard about this program before, but last I checked it, he didn't qualify because his income was too high. So they must've changed the income guidelines. And I'm thinking wouldn't it be nice to not have to pay that $104.90 Medicare premium every month?!! We really could use a break.

The bottom of the brochure reads: Call today to see if you might qualify! so I call the toll-free number and I get connected to a "social service coordinator" and I tell this guy that we received this brochure from United Healthcare regarding saving $104.90 a month in Medicare premiums and it looks like my husband qualifies for this program. And I tell him right up front the amount of Bob's SSD check and ask him if he needs my husband's United Healthcare member ID number.

He tells me no, that he's already got that information, and then he rattles off Bob's full name and address, and I'm figuring, okay, Caller ID and United Healthcare's computer system must've picked up that information and put it on the guy's computer screen already.

Then, he tells me that he cannot talk to me, that he must talk to Bob.

I tell him that I have authorization on file to speak in my husband's behalf, because my husband has aphasia and does not speak well.

He tells me that authorization is with United Healthcare and he is not with United Healthcare but with a company contracted through United Healthcare. So that authorization does not apply.

So I tell him, I have power of attorney, too.

He tells me that I will have send a copy of the power of attorney to their office before they can speak to me.

I tell him that document is 15 pages long. Which means I would have to hire a sitter for my husband, go photocopy 15 pages of a legal size document, then buy a legal size envelope and go to the post office to have it weighed and mailed to you, and you want me to do all of this just to talk to you?

He says, yes.

I tell him, really, I just want to know how to apply for this program, because it looks like he now qualifies as the income limits have changed.

And he tells me, that in order to apply for this program, he (the social service coordinator) must determine first that he (Bob) qualifies.

So I say, well, my husband can give you verbal permission to talk to me. Would that work?

He says, yes, that would work.

I tell him, you'll have to ask him "yes" and "no" questions. He can answer "yes" and "no" questions.

He tells me that he cannot ask "yes" and "no" questions. That Bob must be able to state his full name, date of birth and his address before he can give me permission to talk on his behalf.

So I tell him that's not possible, Bob is never going to be able to say all that stuff.

He tells me to write it all down on a piece of paper and have Bob read it to him.

Which is not going to work. Not at all. I know this. And I tell him, in so many words, that's not going work.

He tells me in that case, I'll just have to copy off that POA document and send it to them.

So now I'm a bit frustrated, so I tell him that I'll give it a try and give me a minute. So I get a big piece of paper and write in large letters Bob's full name, our address and his birthdate. I tell Bob I'm going to give him the phone and needs to tell this guy this information. Bob says, "I'll try."

So I hand the phone to Bob.

I'm sitting next to him, pointing at the words on the piece of paper. Bob listens on the phone, and he tries to say his name but all that comes out is the last syllable of our last name.

Then Bob says, "Three. Three. Three." which,  by the way, has nothing to do with our address. And then Bob says, "Avenue".  Which is actually one part of our address. And then he gets tongue tied and just starts making strange noises....

Then there is a pause.

And Bob says, "Nineteen twenty." Which has nothing to do with anything.

And Bob says, "Yes" and hands the phone back to me.

I say, "Well, that didn't work."

The social service coordinator says, "He tried."

I figured that was the end of it and now I would have to send off the POA papers--when the guy surprises me and asks for Bob's monthly check amount.

I tell him the amount. Which, by the way, I had already told him at the beginning of the conversation. But I tell him it, again.

Then he asks if Bob has a copy of his benefits statement from Social Security.

I tell him, yes. Do I need to get it out? (Thinking he needs some number or something off of it.)

He says, no, he just needs to verify that Bob has "read" it. (Like, yeah, right...)

And then he tells me that Bob does NOT qualify. That his income is too high.

And I tell him that according to the amounts listed on the brochure he DOES qualify.

That's when he tells me that the brochure has THE WRONG INCOME AMOUNTS on it,


So then, just the other day, Bob gets a letter from United Healthcare which states We have received notice that one of your addresses may have changed. And he needs to contact their office with the new address. And I'm thinking, what the f--? Because our address hasn't changed. Heck, we've lived in the same house for ten years.

So I call United Healthcare and, I hate to admit, I am not the nicest person in the world. Because, what is their problem? And where'd they come up with this weird information? Probably the same place they found those income amounts for that brochure.

Anway, the customer service rep tells me that they were notified by a certain government agency that Bob had a change of address. And she gives me the government agency's number and tells me that I should call them right away, otherwise Bob might be in danger of losing his benefits.

And I'm thinking, jeepers! Because we need those benefits. So I call the government agency, and after being on hold for 45 minutes, which gives me plenty of time to think, I decide I am not going through that whole fiasco I did with that social service coordinator.  If Bob's benefits are at stake, I have to get to the bottom of this and there is no time for copying and sending 15 pages of POA documents because the mortgage is due on the first and we are down to $56.00 in the bank account.... So I go into a survival mode and do what must be done. Which is this: I become Bob.

I mean, my voice is on the lower end of the scale. And I figure if I just speak slowly and try to keep very monotone and don't screw up and say the wrong thing like "my husband"....

Finally, an agent comes on the line and I give her Bob's social security number.

And she looks up the file and asks, "Is this Robert? Or someone calling on his behalf?"

And I actually I tell her I'm Robert. And, truth be told, I can't believe I'm doing this.

And I don't think she believes me either, because she asks me for our address, phone number, then PLACE OF BIRTH, then MOTHER'S MAIDEN NAME, which makes me quite nervous but I sail through those security questions without a hitch.

Then I tell her, very slowly and in a monotone voice, about United Healthcare saying they were notified by this agency that our address may have changed and they said that MY benefits might be at risk, and that "my wife and I" have lived in the same house for over ten years and we certainly have not moved and I want to make sure that there ain't a problem here, etc. etc.

And halfway through my speech, I am horrified to realize I am suddenly speaking with a Southern Accent! That I am saying things like "ain't" and "mighty fine" and "you all" and "yes, ma'am" and "much obliged" and GA! Where did THAT come from?

And, after all of that, I find out that that agency hadn't notified anyone of any address change...

As if life isn't hard enough---so do I really need to deal with all this bunk?

Speaking of which, Bob's foot surgery has been rescheduled for September as his pre-op lab tests showed he has a UTI and he's been prescribed an antibiotic and we have to redo the pre-op tests this week. And the doctor's office did not inform me of all of this until AFTER I took Bob off the warfarin and started the lovenox shots. The reason for the delay in calling me? They LOST THE FAX from the lab....

Enough said.